BADD 2017: On dignity

The logo for Blogging Against Disablism DayThis post is part of Blogging Against Disablism Day 2017.

For the past couple of years, my BADD posts have focussed on the issue of people with autism and learning disabilities and the way they are treated in the British psychiatric system, and how they are prone to ending up there for reasons of funding, finding suitable care and lack of understanding on the part of professionals. Some have died; the inquest for Thomas Rawnsley, who died early in 2015 in a Sheffield care home, is still pending. Last year, I mentioned the cases of young people being sent hundreds of miles from home for inpatient mental health treatment as there was none available in their home areas. In the two areas mentioned, namely Hull and Cornwall, a new unit has been approved, though of course that means young people are still being sent away right now. In this post I want to talk about an issue which has come up twice, which is the lack of regard for the personal dignity of people experiencing inpatient treatment, and the impact this must be having on people’s future mental health.

A couple of weeks ago Claire Greaves, a mental health blogger who has a personality disorder and anorexia nervosa, posted about her experience in a secure unit, which she did not name although she has done in the past. It is run by the Priory Group, although when she first went, it was owned by Partnerships in Care, which also ran a chain of mental health units, including secure units, around the UK (including The Dene, the unit near Brighton to which Claire Dyer was sent, briefly, in 2014). Claire Greaves was sent to the secure unit in May 2016, having previously been in an acute mental health unit since late 2015. The things she describes are common in secure units; person-centred care takes second place to the ‘need’ for security, a response PIC made when the Care Quality Commission raised this issue at an inspection of one of their secure units, so someone who has had regular leave (escorted or otherwise), who was allowed access to the Internet and to a mobile phone, and enjoyed regular family visits in a previous unit will have none of these once transferred to a secure unit.

Claire was transferred from this unit to a general hospital, where she remains under supervision, in December 2016 after her anorexia became life-threatening. She is expected to be transferred to an eating-disorder specialist unit shortly.

I never went outside, the whole 8 months I was there the only times I went out of the tiny ward were to go to hospital. I wasn’t allowed anything in my room, not even cards people sent me, I wasn’t allowed a pen or cutlery or access to the Internet or my phone or iPad or computer. At one point I wasn’t even allowed my clothes and I wore anti rip smocks for months. One time early on in my admission when I was still having periods I wasn’t allowed a sanitary towel and I literally had blood running down the insides of my legs.

This last thing is also something I heard from the mother of a teenage girl with autism who was held in an adolescent PICU (psychiatric intensive care unit) run by Priory a couple of years ago. I do not see how this is supposed to keep anyone safe; it is possible to get anti-rip clothing which allows the wearing of a sanitary or incontinence pad underneath, so there is no excuse to just leave a woman or girl to bleed all over her clothing, or the floor. It is well-known that a major cause of eating disorders in girls is discomfort with the changing body, which includes starting periods, and part of recovering from malnutrition is starting periods again; the fear of further indignity will make this process an awful lot harder, especially if someone is out of hospital and not compelled to eat, or tube-fed. The insistence on ‘supervising’ people in the toilet also strikes me as an abuse stemming from disregard for dignity: some people find it difficult to ‘go’ when being watched, and it cannot be necessary for everyone, particularly when they are intensively supervised in everything else they do.

Disregard for dignity is a common feature of disablism; as the public’s idea of disability consists of a few impairments such as spinal cord injury, muscular dystrophy, cerebral palsy and so on, there is a perception that disability necessarily brings indignity, particularly in the form of incontinence. One remembers the case of Elaine MacDonald whose local council declined to provide a night carer to help her to the toilet as they decided incontinence briefs would suffice, when she was not incontinent. These sorts of attitudes when combined with the power that mental health professionals hold over inpatients can lead to ‘care’ which is devoid of compassion and understanding, and compound the existing illness with new trauma — and the person affected may, of course, already be dealing with other trauma. I hope more survivors speak out and there is serious debate about the indiscriminate use of dignity-denying supervision and restraint practices.

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